ABOUT US
The Sydenham's Chorea Association was founded as a Charity in November 2016, from a pre-existing group of parents of children with Sydenham's chorea referring to the Royal Hospital for Sick Children, Glasgow, Scotland. Given the rarity of the condition and the absence of this type of support in other countries, the association was constituted as an international charity (Charity Number SCO047005).
ADRIAN SIE
President
Parent of a child with Sydenham's chorea and consultant in paediatrics, University Hospital of Wishaw, Lanarkshire, Scotland.
Honorary Senior Lecturer at the University of Glasgow Medical School, Scotland.
Dr. MICHAEL MORTON
Honorary President
He has worked with the Association from the beginning. Since 2009 he has been involved with the families of children with Sydenham’s chorea as a consultant child and adolescent psychiatrist in the Neuropsychiatry service at the Royal Hospital for Sick Children, Yorkhill, Glasgow.
He has retired from clinical practice but retains his academic interests, as an Honorary Clinical Senior Lecturer in the University of Glasgow. He has contributed to several research studies related to Sydenham’s chorea.
ANDREW SAMUEL
Co-Founder, Patron, Past President & Trustee
As a parent of a child affected by Sydenham’s Chorea, Andrew is passionate in helping other children and families affected throughout the world.
SAMANTHA SAMUEL
Co-Founder, Patron, Treasurer, & Trustee
As a parent of a child affected by Sydenham’s Chorea, Samantha is passionate in helping other children and families affected throughout the world.
EMANUELA FERRARIN
Trustee
Italian parent and health research collaborator. She joined the Charity since its foundation contributing to spread information on the condition among Italian parents and to narrate the condition to children. Since 2020 involved in the Charity's board meetings and Charity’s online events.
PAULINE SIE
Collaborator
Pauline Sie, from Glasgow, Scotland, is a paediatric nurse.
She is mother to Reuben, who had rheumatic fever with Sydenham’s chorea in 2014 aged 6.
NADINE MUSHET
Collaborator
Founder and board member of the Sydenham’s Chorea Association, supporting their education and fund raising. She contributed to the production of a patient information leaflet on the condition and of a video with a group of children with Sydenham’s chorea telling their stories. Nurse specialist and non-medical prescriber for Cumbria, Northumberland, Tyne and Wear (CNTW), Honorary research assistant for Glasgow University with a particular interest in research into Sydenham’s Chorea, is author of publications on the condition including a surveillance study and broader international research.
LUCIA DELL'ACCIO
Collaborator for specific projects
Parent of a child with Sydenham’s chorea. Involved in a team project of Italian parents to improve critical issues of prophylaxis with benzylpenicillin (care and pain). Moderator of the Italian Facebook group "Endocardite reumatica, Corea e/o PANDAS”.
WHAT WE DO
We strive to provide reliable information about this rare condition, offer support to those affected, and promote scientific research to discover more on the condition and on treatments. We set up a Facebook support group where people can share their experiences with the condition. We regularly organise meetings for patients and their families to discuss the condition with experts. We also provide training and information to clinicians and teachers on request.
SPECIAL THANKS
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Christine and Paul Thomas - co-founders and former trustees
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Catriona Clark - former secretary
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Glasgow Children’s Hospital Charity and Medical Staff at the Glasgow Children’s Hospital for support in setting up the charity
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Numerous Senior Academic Medical Staff for support with research in Sydenham’s chorea